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OIF National Conference

The Osteogenesis Imperfecta Foundation will host its biennial National Conference in Baltimore, Maryland on July 13-15, 2018. The conference program will feature a full lineup of information sessions on medical and practical living topics, forums to connect with leading experts in OI care and research, and other opportunities. More.

Together, we can be stronger for those that need us.

Dear Rare Disease Community Member, Wow! What an exciting time to be involved with rare diseases. Never before has there been so much progress in diagnosing rare diseases and in the availability of new treatments! 2017 promises to be another record year in terms of new therapies becoming available for patients with rare diseases. So as we Read more >

NORD Issues Statement in Response to Senate Vote on the Orphan Drug Tax Credit

Washington, D.C., December 2, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the Senate passage of its Tax Cuts and Jobs Act: “Today, the Senate voted to substantially diminish the Orphan Drug Tax Credit as part Read more >

NORD Publishes Information for Physicians and Patients on Three Rare Diseases

Washington DC, Thursday, November 30 — The National Organization for Rare Disorders (NORD) has published new physician guides to promote diagnosis and treatment for patients with three rare medical conditions: hepatocellular carcinoma (HCC), acute myeloid leukemia (AML) and pigmented villonodular synovitis (PVNS). NORD has also published corresponding reports on the three conditions for patients and their Read more >

9th European Conference on Rare Diseases & Orphan Products

ECRD – the European Conference on Rare Diseases & Orphan Products is the largest multi-stakeholder gathering in Europe for the rare disease community covering research, development of new treatments, healthcare, social care, public health policies and support at European, national, regional and international levels. ECRD 2018 will take place on 10-12 May 2018, at Messe Wien Congress Center, Vienna, Austria. “Rare Read more >

Rare Disease Advocates Host a Save the Orphan Drug Tax Credit Rally

Patients speak out as Congress moves forward with a tax bill that would negatively impact individuals with rare diseases Washington, D.C., November 28, 2017 –  Today, the National Organization for Rare Disorders (NORD) is hosting a Save the Orphan Drug Tax Credit Rally for the rare disease community in response to the tax reform bill Read more >

Step Up! For Syngap – Houston Zoo Walk

Bridge the Gap – SYNGAP Education and Research Foundation (501(c) 3) is a non-profit organization whose mission is to serve, educate, and fund research for families coping with the effects of SYNGAP1 mutations. We are hosting our First Annual STEP UP for SYNGAP – Houston Zoo Walk to be held on December 9, 2017 at the Read more >

2018 VHL Alliance Annual Family Weekend

The VHL Alliance Annual Family Weekend is geared towards educating patients, families, and friends with the goal of empowering them to become active partners in clinical care.

Regenerative Medicine Innovation Workshop: Focus on Adult Stem Cells

The 21st Century Cures Act, passed in December 2016, establishes a Regenerative Medicine Innovation Project to accelerate the field by supporting clinical research on adult stem cells while promoting the highest standards for carrying out scientific research and protecting patient safety. For more information about the Regenerative Medicine Innovation Project, visit www.nih.gov/RMI. On December 6-7, 2017, Read more >

Statement by 36 Patient Organizations in Opposition to Senate’s Proposed Weakening of the Orphan Drug Tax Credit

Washington, D.C., November 14, 2017 – “Today, the Senate Finance Committee continues its consideration of the Tax Cuts and Jobs Act. Our organizations, which collectively represent millions of individuals with rare diseases, stand united in opposition to the Senate Finance Committee’s proposal to substantially weaken the Orphan Drug Tax Credit (ODTC). The Orphan Drug Tax Read more >

Save Orphan Drugs

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NORD Publishes New Educational Resource on Li-Fraumeni Syndrome

Washington, D.C., November 13, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Li-Fraumeni Syndrome. This new resource is available free online to individuals around the world. As the primary advocacy organization in the U.S. for people who have Read more >

NORD Issues Statement on Nomination of Alex Azar for Secretary of the Department of Health and Human Services

Washington, D.C., November 8, 2017 — Peter Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement today in support of Alex Azar’s nomination for Secretary of the Department of Health and Human Services (DHHS): “DHHS is Read more >

NORD Issues Statement in Response to Senate Finance Committee’s Proposal to Weaken the Orphan Drug Tax Credit

Washington, D.C., November 10, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the release of the Senate Finance Committee’s proposal to substantially weaken the Orphan Drug Tax Credit (ODTC) within its Tax Cuts and Jobs Act: “On Read more >

Webinar on Affordable Care Act Open Enrollment: What You Need to Know

Wednesday, November 15 7:00 p.m. EST REGISTER NOW With the December 15th deadline to select an Affordable Care Act (ACA) health plan looming, NORD is hosting a free webinar to aid rare disease patients and caregivers in navigating what may be a confusing process. Join NORD’s policy team for an educational webinar about the ACA health insurance marketplaces. Read more >

11.2.2017 Downloadable Media Resources

The NORD word marks, sub brands and logos are the sole and exclusive property of NORD. Your use of any word mark and/or logo implies acceptance of, and agreement with, the terms of this policy. If you do not accept and agree to follow the rules as set out in this policy, you do not Read more >

Join NORD & SSA in Forum on Compassionate Allowances & Rare Diseases

NORD Board Chair Marshall Summar MD will moderate a National Disability Forum on Compassionate Allowances and Rare Diseases to be hosted by the Social Security Administration (SSA) on Tuesday, Nov. 7. The event will provide a platform for rare disease patient advocates and medical experts to suggest diseases for consideration for SSA’s Compassionate Allowances list. Read more >

NORD Releases New Documentary called “Good Morning Peyton”

View the full documentary. Danbury, C.T., October 26, 2017 – Imagine never being allowed to feel the sun on your skin. For 11-year-old Peyton, who is allergic to sunlight, that is a reality. In a new documentary released today, see how the National Organization for Rare Disorders (NORD) partnered with Peyton’s hometown to turn one special Read more >

New Study Examines Use and Cost of Orphan Drugs

Orphan Drugs Account for Only 7.9% of Drug Spending in the U.S. Washington, D.C., October 17, 2017—Orphan drugs accounted for only 7.9% of total drug sales in the U.S. in 2016, according to a study issued today by the QuintilesIMS Institute. The study, commissioned by the National Organization for Rare Disorders (NORD), analyzed the role of Read more >

Analyzing Trends in Orphan Drugs and Expenditures

Quintiles IMS issued a study which finds that orphan drugs accounted for only 7.9% of total drug sales in the U.S. in 2016. This study, released on October 17, 2017, was commissioned by NORD and analyzed the role of the Orphan Drug Act and orphan drug usage and costs, to address a number of public policy Read more >

Download: Analyzing Trends in Orphan Drugs and Expenditures

Quintiles IMS issued a study which finds that orphan drugs accounted for only 7.9% of total drug sales in the U.S. in 2016. This study, released on October 17, 2017, was commissioned by NORD and analyzed the role of the Orphan Drug Act and orphan drug usage and costs, to address a number of public policy and Read more >

NORD Announces Three New Hires to Lead Research, Education and Business Development Programs

Danbury, CT, October 10, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization dedicated to helping the 30 million Americans with rare diseases, announces the appointment of three new hires: Vanessa Boulanger, Director of Research Programs; Sika Dunyoh, Director of Education Programs; and Alexa Moore, Vice President of Development. “As NORD continues Read more >

2017 VHL Annual Family Weekend

The VHL Alliance Annual Family Weekend is geared towards educating patients, families, and friends with the goal of empowering them to become active partners in clinical care.

NORD Publishes New Report on RYR-1 Related Diseases

Washington, D.C., October 5, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on RYR-1-Related Diseases. This new resource is available free online to individuals around the world. As the primary advocacy organization in the U.S. for people who have Read more >

2017 NORD Rare Summit Contact Form

Thank you for being here with us during the 2017 NORD Rare Summit! Rather than sharing your business card with us, please fill out the form below to get in touch after the event with someone at NORD.

2018 PAP Enrollment

Program Participants (English) Thank you for taking the time to re-enroll with NORD’s Patient Assistance Programs for 2017. Please download and complete the following form and return it to NORD via email, fax, or postage by Friday, December 29, 2017. Please reference the email that was sent to you for the correct email address, fax number, and address. Read more >

MDS Patient and Family Forum

This FREE event is sponsored by The MDS Foundation, Inc. Presenters: Stuart Goldberg, MD Hackensack University Medical Center Hackensack , NJ Jayshree Shah, APN-C, RN, MSN, BSN, BS Hackensack University Medical Center Hackensack , NJ Topics to be covered include: New Therapies and Patient Treatment Options Patient Support Group Open Discussion Quick Tips for Patients and Caregivers Read more >

NORD Issues Statement Opposing the “Graham-Cassidy” ACA Replacement Plan

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement opposing the “Graham-Cassidy” plan to repeal and replace the Affordable Care Act (ACA): “The Senate is currently considering a proposal put forward by Senators Graham, Cassidy, Heller, and Johnson that would Read more >

XLH Day

Join the XLH Network for XLH Day on October 6-7, 2017 in Connecticut! You will meet other families dealing with XLH, discuss the challenges, learn how others cope, and develop new strategies for managing your own or your child’s symptoms. There will be a casual Meet and Greet on Friday evening at the Frank H Read more >

Over 140 Patient Organizations Support the Orphan Drug Tax Credit

Today, NORD joined over 140 patient organizations in sending a letter to Congress in support of the Orphan Drug Tax Credit (ODTC). We are extremely grateful to all those organizations that joined us and lent their support. It is vital that the Orphan Drug Tax Credit remains in place, and the rare disease patient community Read more >

2017 MDIC Annual Public Forum

Gathering industry, government, and nonprofit partners to advance the regulatory science of medical devices. The 2017 Annual Public Forum gathers MDIC members and the broader medical device and diagnostics community to share insights on current trends in regulatory science and the progress MDIC has made in advancing the field. MDIC works collaboratively to advance regulatory science Read more >

NORD Publishes New Rare Disease Report on Shprintzen Goldberg Syndrome (SGS)

Washington, D.C., September 15, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Shprintzen Goldberg Syndrome (SGS). This new resource is available free online to individuals around the world. As the primary advocacy organization in the U.S. for people Read more >